Friday, November 22, 2013

Read about Ruth Taffet

Ruth Taffet

Type of Porphyria: 
Acute Intermittent Porphyria (AIP)

I was diagnosed with AIP 45 years ago. My 24 hour quantatative urine was sent to Dr. Watson. The illness began with a ruptured tubular pregnancy. After the operation, I was in extreme pain. I was sent home not being able to retain food or move my bowels and was extremly nauseated. Nine days later the doctor ordered over the phone a triple suppository of compazine. This caused me to faint immediately, and I was rushed to the hospital. My pulse 180, was sent to Booth Memorial in Queens N.Y where they couldn't find out what was wrong, I was given a barium enema, a levine tube, many medications that had disastrous effects, including going into a coma. Fortunately, the doctors that were attending the women in the next bed said, "I know that woman is not crazy." They happened to look in my bedpan and saw red urine. I awoke completly paralyzed. Pins could be stuck all over my body. I couldn't feel anything.
Finally, three months later I was released from the hospital. My hands were shaking, and eventually I couldn't stand the smell of food and was depressed. I was taking a pill that had been killing people in England,. About five years ago, doctors discovered I didn't have any Iron in my bone marrow. Every test proved negative, but in six months of taking iron, my count was normal.
I now have a hemotologist check my blood every six months. Since I had a bout with blisters, I believe I might have HCP. I am eighty years of age, I'm carefull of all medication. I am healthy and only take a mild blood pressure pill. My case was published in the medical journal, Lancet, and was written by Dr. Irwin Cohen in 1962.
"Remember.....Research is the key to your cure!"

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Organizations around the world unite for Porphyria links

The following organizations have websites in English The American Porphyria Foundation has a very extensive website, including a section ...